Life, Disease, and Renewed Hopes and Dreams

As a kid, I shared similar career aspirations as my friends ― astronaut, marine biologist and lawyer were my top three. With high hopes and a head stuck in the clouds to match, I was going to space to save Earth from a meteor, help all the endangered animals in the marshes, or argue for a living (which seems reasonable).

My freshman year at Arizona State is when I decided those options weren’t happening. I was going to work instead in sales for professional sports. I scored the opportunity to intern with the Los Angeles Clippers in the fan relations department. Having that experience not only confirmed my passion of working with basketball and people, but also having that on my resume helped continue to open up doors within my college career. I was able to establish a decent professional reputation in Phoenix.

It wasn’t until a year after graduating and moving back home to Los Angeles that I realized sales in the NBA wouldn’t be a career choice, either. At 22, I was diagnosed with Friedreich’s ataxia. It was gut-wrenching to read the prognosis of the disease, and how dependent upon others I was going to have to become to live my life. I thought, “You’re telling me, the girl who moved to Arizona at 17 by herself, lived independently for four years and took care of almost everything alone, athlete her entire life, is eventually going to become wheelchair-bound and will need someone’s help with things like getting out of bed, dressing and eating? You’re stupid.”

Denial was definitely the state I was in around my diagnosis. I didn’t believe I was going to potentially develop diabetes or hearing loss. I didn’t believe that’s why I was getting fatigued so quickly, and Red Bulls and coffee weren’t enough anymore. I mostly didn’t believe I would be in a wheelchair ― but, then again, who does? It wasn’t until I started becoming involved with the FA community, and being exposed to the possibilities of what my future will entail, that I snapped out of denial and came to terms with my new reality.

I had to push myself to attend symposia, fundraisers, join organizations, and learn as much as I possibly could until I felt my head about to explode. I had to push because of how difficult it was to constantly see what my future would entail. The struggle to eat, to go to the bathroom, to drink any kind of liquid — to simply exist — it was hard. But once I got past the initial push, I became more and more comfortable with my new fate. I could now have an even better time, because using my walker or wheelchair meant I wasn’t thinking about falling or placing one foot in front of the other. I warmed up to using all the devices needed to help me when I have “bad days.” I became less self-conscious about being in public (still am sometimes, it’s not gone) and most importantly, I learned to enjoy and appreciate my health and the elementary stage of my progression.

Depression is something that, I think, comes along with being diagnosed with a disease like FA and, truthfully, it’s something that will never fully go away. But I do believe there are healthy ways to manage the anxiety and depression we do have. Writing is one of my coping mechanisms, and I plan to do it for as long as I physically can. Friedreich’s has already taken away my ability to hand-write in journals, but I can still type!

The goal is to get people to pay attention and actually listen to what Friedreich’s ataxia entails and what it is, to let people know how lucky they truly are and to not take the small things for granted. That personal goal I have of raising awareness for FA, of being active in the community and appreciating life, will be achieved by sharing my story and perspective on dealing with life with FA with all of you!

My hopes and dreams as a kid were innocent and confident. But as an adult, rather than become a specific person in a specific career, I aspire to make a change and, hopefully, become a positive influence for the world to see. I appreciate you for reading my words and sticking with me.

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Note: Friedreich’s Ataxia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Friedrich’s Ataxia.